They’re living with dementia. They’re in a choir. Can singing improve their well-being?

SINGAPORE: By her own admission, Jacqueline Sim is grumpy “most of the time”, though it may not seem so to others.

To her twin daughters, Charmaine and Cheryl Tan, the 72-year-old is still the witty mother they have always known.

There was once, for example, she asked Cheryl to sing her a lullaby. And when her daughter questioned when she had ever done so, Jacqueline replied: “You can start now.”

Sitting in her wheelchair, she looks delicate. The loss of much of her mobility is the most visible sign of the illness she was diagnosed with in 2015.

Less visible, however, is the way she feels when people are watching her or judging her or being impatient with her because of her dementia. But she is affected.

Low self-esteem? Yes. Scared of being laughed at? She attests that too.

While there is no cure for the debilitating condition she has, is there something that can make a difference to the way she feels?

How about putting her, and others with dementia, in a choir to see whether choral singing can help to improve their cognitive and psychosocial well-being?

That is what Jason Lai, the principal conductor of the Yong Siew Toh Conservatory Orchestra, did recently when he formed Singapore’s first performance choir made up of nine people with dementia and their carers.

And the task ahead of him was to get them to sing in a concert on Orchard Road, within three months.

The road to the concert — documented in the new CNA series, Sing To Remember — turned out to be filled with tears, with glimpses into the realities of living with dementia and with some unexpected turns.

And it does offer an answer to the question of whether music can slow the decline caused by one of the most threatening diseases in an ageing population.

WATCH: Part 1 — Can singing slow dementia? I start a dementia choir to find out (46:25)

‘I CROAK. I DON’T SING’

For Jacqueline, singing is not only something she likes, but also something she did when she was working: She used to work in childcare and would sing to the children.

Two years after retirement, she began to develop symptoms of dementia. The diagnosis “was a shock to all of us, to her as well”.

“She’s like, ‘Don't tell anyone’, that kind of stuff. But after a while she accepted it, and then she (put a brave face on) it. And she doesn’t run away from it any more,” said Charmaine.

“Right from the beginning, Mum would be physically much weaker. But there was a stabilising period where she could walk on her own and everything. Then (with the) circuit breaker and all that, it was a steep decline.”

Charmaine often uses an analogy to describe her mother to people. “Our Internet is very fast, right: 3G, 4G, then 5G. Mum’s still on dial-up. So wait for the ‘eeeee’, then the answer will come,” she said.

“She’s still herself. Her personality is there: She’s funny, she’s smart … just much slower.”

As if to illustrate this, when quizzed about her twins, Jacqueline said slowly: “They’re caring to the point of irritating me.”

As for her singing, she deadpanned: “I croak. I don’t sing.”

It was a bit of a struggle, physically, for her to sing, observed Jason. But because of the “passion and dedication” he saw at the weekly choir sessions, he wanted her — and the others with dementia — to each do a solo in the concert.

“I wanted her to bring back that sense of self-esteem, bring back that (sense that) she can be proud of something that she’s achieved,” he said. “I want them to push their limits. I want them to dream big.

“There’s this stigma around individuals living with dementia not being able to do very much. But I’ve seen they can do more than we think.”

THE POWER OF SINGING

Around one in 10 people aged 60 and above in Singapore live with dementia.

And the first study of its kind on how music could be harnessed to prevent dementia was started here, according to National University of Singapore (NUS) research assistant professor Feng Lei at the Yong Loo Lin School of Medicine.

A dementia prevention research choir was formed in 2015 as part of an ongoing study aimed at preventing and alleviating symptoms of depression and dementia.

While all that is really needed for choral singing is the human voice, “it’s a kind of very complex cognitive activity”, said Feng, the principal investigator.

“Listening to music is passive. But (for) choral singing, you need to harmonise with your group. You need to know when to sing your part, and you need to co-ordinate with your director, with your choir members.”

There is only so much modern science has done otherwise.

“People living with dementia are losing function, losing memory (and then) becoming disabled. So we don’t have enough interventions available,” said Feng. “Medicine can only slow the progression. But choral singing is something like exercise. It’s a workout.”

So far, the results suggest that choral singing can help to improve seniors’ concentration, memory, psychological well-being and “something called information processing speed”.

“With the medicine, together with the choral singing or other intellectual activities, I think the outcome (for) people living with dementia will be optimised,” added Feng.

Scientists have already found that musical training strengthens some neural connections in the brain, which aids the development of cognitive abilities.

Dementia, meanwhile, damages various parts of the brain that control memory, behaviour and language. These disruptions spread over time, but the area where musical memory is stored remains relatively untouched until the last stages of dementia.

This is why music can engage those living with dementia, as music therapist Evelyn Lee does.

“Sometimes they get very lost in time and space. They don’t really know where they are or why they’re here. And music — call it a bit like a Pied Piper — is like a little string that strings them along,” she said.

“We’re always believing that dementia takes away the ability to learn and retain current memories and new experiences. But … they have the ability to learn new things with music.”

Singing together also unleashes several chemicals within the brain. These include dopamine, the pleasure hormone, and oxytocin, the love hormone, which strengthens bonding between individuals. Singing also calms people by lowering their cortisol, the stress hormone.

THE ‘MISSING’ CHOIR MEMBER

In the United Kingdom and the United States, there are performance choirs that include members with dementia. So why not Singapore, figured Jason.

But at his first session, it hit him that he may have bitten off more than he could chew when a choir member went missing.

Steven Lau, 67, developed dementia a decade ago and has a combination of Alzheimer’s, the most common form of the disease, and vascular dementia, which is caused by disrupted blood flow to the brain.

And before the rehearsal even began, there was anxiety when his wife, Wong Lai Quen, did not know his whereabouts. Jason went to search for him and eventually found that he had gone to the toilet, with a minder nearby.

“They were quite chilled about it, but we were the ones panicking,” recounted Jason.

This situation that arose is a typical concern, said Lai Quen. So when the couple are outside, say, in a shopping centre, she makes sure he can see her, especially when turning a corner.

What stresses her, however, are the times he bangs the table or the doors at home.

“I’m quite scared because Steven’s never done this before,” she shared. “Suddenly, he gets upset. It’s kind of like he becomes a different person. … Physically he’s the same, but mentally he’s not.”

The couple met in hall at university and have been married for 40 years, with three daughters. It has been a union full of “happy times”.

Lai Quen recounted what one of their girls told her: “Whenever she and her husband argue … my daughter would say, ‘Can’t you be like my father to my mum?’ Because they saw how Steven treats me. He’d never scold me.”

Asked to describe Lai Quen, he said: “Oh, she’s a loving wife.” And when she light-heartedly pressed him to say more, he joked: “If I could, I’d publish a newspaper (to describe her).”

According to her, he also “likes to joke about pretty women and all”. “But in his heart and in his mind, he has only one wife,” she added. To that, he quipped: “Not 20, uh?”

Then he said: “Seriously, I’m very glad that she stayed on with me. I’ve got dementia.”

It was an affirmation of love he sealed with a kiss.

KEEPING THEM ENGAGED

In the choir sessions, Steven also chimed in with funny comments. On one occasion, when he was told it was his turn to sing, he jested: “Why (is it) my turn, not my wife’s turn? I subcontracted (the singing) already.”

At other times, he became disengaged from the rehearsals and his mind wandered.

To get him and the others to stay focused, Jason sought the advice of Evelyn. One thing she found “quite helpful”, she told him, is pairing the music with actions such as hand gestures.

“The actions also help them activate a different part of our brain, the co-ordination and movement part,” she said. “The more we engage the brain during the music experience, the higher the chance that they’re able to retain it.”

It is not altogether dissimilar to the series of tasks that Daniel Lim gets his 84-year-old father — familiarly known as Uncle Peter to the choir members — to do every day to keep engaged and maintain a level of independence.

Describing his morning routine, for example, Uncle Peter said: “I’ll wash my face, brush my teeth, clean up properly and sip the coffee. I’ll put (spread on) two pieces of bread. Then I’ll sit down and then enjoy my breakfast.”

It might seem trivial, but the repetition helps the brain. “The sensory experience (and) the idea of doing that helps him get his motor skills … in place, and the confidence level increases,” said Daniel.

“These are simple interventions that we can do at home so that we can continue to maintain his level of cognitive ability.”

WATCH: I became Dad’s caregiver at 29 — My top tips on dealing with dementia (11:58)

Uncle Peter is the oldest choir member and the one living the longest with dementia, Alzheimer’s to be precise. When he was diagnosed with it 13 years ago, he did not know what dementia was and how he got it.

“I felt, like, remorse (and) lonely,” he said. “When I talked to friends, I dared not talk too much (for fear) I’d speak nonsense and they’d say … ‘His brain isn’t working.’”

He became reclusive and quieter.

But he likes to sing and even calls himself “the king of karaoke”, so no prizes for guessing whether he enjoyed being part of the choir.

“Every morning, he’d … wake up and then he’d ask, ‘When am I going out to sing?’” said his wife Tan Quee Eng. “Every day.”

Getting him to sing “something in the right place at the right time”, however, was something that still needed practice with eight weeks to go to the concert, observed Jason.

THERAPY FOR THE CARERS

The choir sessions were not all song and dance, however.

In one of the weeks, Jason arranged for Evelyn to guide the carers through an imagery and music session. She played some classical music, after which they spent about 10 minutes drawing any images or flashbacks they may have got.

It is a psychotherapeutic approach that reduces stress and is increasingly being used as an intervention for carers of those with dementia.

“When I hear the music, it gives me peace of mind. This caregiving journey is very tough,” Lai Quen shared with the rest. “No one to talk to, no one will understand the kind of stress that I go through.

“I have a full-time job. Why do I choose to do a full-time job? It’s also because it takes me away from all the repetitive delusions that my husband has.”

The last three years have also been tough on Evon Estrop. She had to look after her mother who had cancer and then her mother-in-law. “And suddenly, my husband was impacted,” she said tearfully.

“(With) the promises I made to my parents, to my husband, I’ll look after them as best as I can.”

Her husband and former commando, Peter Estrop, is the youngest of the nine choir members with dementia. The 63-year-old was diagnosed with Alzheimer’s just two years ago.

That means he has young-onset dementia, which develops before the age of 65, and the decline will be more rapid than for others.

To help him remember his daily tasks and appointments, Evon came up with a noticeboard-cum-calendar at home, which he refers to “at least about three times a day” to tell himself “I’ve got this”.

“She found that the only way to get me in line was to build something like this,” he said. “Many times, it just goes out of me, and I’ve got to go back and confirm what I have again today.”

To stimulate his brain, he spends at least an hour each day working on number puzzles. Sometimes he could attempt one for two hours. “But I don’t want to give up,” he said.

“He does get frustrated when he can’t do a certain puzzle,” said Evon. “I see him trying every day, and I’m so proud of him.”

It was very different when he first obtained his diagnosis and “lost a lot of confidence”, she recalled.

He can still remember that period. “I was suffering, but I think you were suffering more. And I couldn’t do anything about it,” he recounted to his wife, trying to hold back his tears.

“I felt useless. But it took about two or three months (to pull) myself together.”

WATCH: I was an SAF commando. Alzheimer’s won’t stop the fighter in me (9:45)

They have been married for 24 years — “wonderful years”, Evon described. “I’m grateful that I still have Peter with me, and I’m enjoying every minute that I have with him,” she told the other carers.

MORE THAN A FEELING

With music therapy going on, their loved ones had to fend for themselves for an hour. And Jason initially found it a bit of a challenge getting the group to follow the songbook to sing the right verses.

But it ended up being a “wonderful session”, he said afterwards. “They all just want to sing. And they want to help each other.”

This “group feeling” was palpable from the start, he observed. When he asked Jacqueline, for example, what she liked about the first choir session, she replied: “The camaraderie among the members.”

It was more than a feeling, however.

WATCH: Part 2 — We started a choir to fight dementia: Can music heal the brain? (47:03)

When the choir first came together, those with dementia were given a battery of tests measuring their level of cognitive function, social support and emotional state of mind.

The tests were repeated three months later, and the results came as “great news” to Jason. Their combined score for cognition, for example, improved from 20.8 to 21.7 out of 30.

A one-point increase is “quite significant”, said Kua Ee Heok, who is leading a 10-year longitudinal dementia prevention study and who assessed the choir members’ test results.

“What really improved was the social connectedness scale — your social ability to move around and talk to people,” said Kua, the Tan Geok Yin Professor in psychiatry and neuroscience at NUS and a National University Hospital emeritus consultant.

Their social connectedness improved by 5.4 points, while their anxiety level fell by 2.4 points. And he concluded that choral singing can indeed improve cognition, albeit based on a small sample size.

“More importantly, they meet more friends … which is wonderful for them,” he said.

Before they could perform, however, there was a late twist — with one week to go — when Jacqueline told Jason she did not think she would be singing in the concert. And her solo part was to be the opening act.

The reason was “apprehension”, she said, so Jason tried to reassure her, saying: “Don’t be afraid. Not to worry, you’ll be good. Just enjoy yourself.”

It worked. Their concert, organised as part of the Great Christmas Village at the Ngee Ann City Civic Plaza, went off as planned in December. And she kicked off the performance with a verse from Joy To The World.

She had one word, too, to describe the key takeaway from being in the choir: “bravery”.

Watch the two-part series Sing To Remember here and here.